Bilingualism in children with a dual diagnosis of Down syndrome and Autism Spectrum Disorder

Ward, Rebecca; Sanoudaki, Eirini

doi:10.1080/02699206.2020.1818288

Cited by 7 publications

(2 citation statements)

References 73 publications

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“…The specifics of these cases help us learn strategies to support youth and their families struggling with the “double jeopardy” of 2 diagnoses as is also the case for individuals with Down syndrome and autism spectrum disorder 2b,3b and other disabilities. These youth also remind clinicians that when one approach fails, rethink which diagnosis you are addressing in isolation that might be better addressed in concert.…”

Section: Marilyn Augustyn MDmentioning

confidence: 99%

Hyperphagia and Down Syndrome

Sharma

Baumer

Augustyn

2023

J Dev Behav Pediatr

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CASE 1: A.Z. is a 14-year-old young boy with Down syndrome and intellectual disability. As a baby and toddler, A.Z. struggled with swallowing dysfunction and recurrent aspiration, which improved by the time he was school aged. At the age of 2 years, his body mass index (BMI) was 95.98% (Z score 1.75). During his early school-age years, A.Z. began eating a wider variety of foods. As he grew taller and remained active, his BMI improved briefly during this time. Between ages 10 and 12 years, concerns regarding increased appetite and excessive weight gain emerged. His BMI increased from 82.56% (Z score 0.94) to 98.27% (Z score 2.11) during this time. He became insatiable; he ate when he was happy, upset, or bored. He had a compulsive need to eat all day, which escalated while staying home during the COVID pandemic. Despite having complete meals and a variety of snacks, he overate and sought out food and snacks, no matter the time of the day. Food also became a source of contention and a trigger for verbally and physically aggressive behavior when parents attempted to restrict food intake. Behavioral therapy was recommended to address his eating patterns as a part of his behavioral management plan. Over time, many strategies were used, including a token economy reward system, setting firm limits around snacking and meals, creating a food schedule with times and forced choice options, use of coping skill training, a feelings thermometer, and communication supports. These interventions had moderate intermittent success; however, overeating and consequent power struggles continued to be the major challenge reported by the family. He was started on a long-acting stimulant medication daily, intended to address impulsive and aggressive behaviors, and with potential benefit of appetite reduction. However, although there were some improvements in behavior, there was little to no effect noted on his appetite. Of note, he was diagnosed with celiac disease and severe obstructive sleep apnea at this time. A.Z. remained compliant with his gluten-free diet despite the challenges he experienced with food seeking and portion control. Overall, despite making excellent progress in behavioral regulation and performing particularly well in structured settings outside the home (i.e., school or summer camp), A.Z. continued to binge eat and seek out food with his most recent BMI at 98.62% (Z score 2.20). CASE 2: C.J. is a 9-year-old boy with Down syndrome and intellectual disability. As a toddler, C.J. had a brief period of time in which he was noted to overeat or not sense when he was full and subsequently gag or vomit after meals. At age 5 to 6 years, C.J. began demonstrating a more voracious appetite and increased weight gain; his BMI was 99.43% (Z score 2.53). Behavioral strategies, such as food schedules with forced choice options, were recommended. C.J. responded with increased dysregulation to the limit setting. An additional trigger for C.J. was the irregular visitation schedule with his father. He also hid and hoarded food; for example, he often ate food and hid the wrappers in the trash. Locking the refrigerator and cabinets resulted in binging on whatever he could find, such as ketchup packets. If C.J. wanted food during a time outside of his schedule, he was provided a list of alternative activities to choose from. It was recommended that his parent portion foods for him and set clear expectations of eating in the kitchen alone. C.J. was trialed on a short-acting alpha-agonist agent for 1 year to help address some of his behavioral challenges. Despite initial improvement on this regimen, behavioral challenges reemerged, and his eating behaviors worsened, so the medication was stopped. After stopping the medication, C.J. responded well to the limit setting, including regulating his own portion sizes and using a portion control plate. The family believed that the short-acting alpha-agonist worsened his food-seeking behaviors, although this was not clinically apparent. Despite having continued affinity for certain foods and snacks, C.J. was no longer binge eating or hoarding and hiding food. His most recent BMI remained elevated at 99.24% (Z score 2.43).

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Section: Marilyn Augustyn MDmentioning

confidence: 99%

Hyperphagia and Down Syndrome

Sharma

Baumer

Augustyn

2023

J Dev Behav Pediatr

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“…Since 2014, more studies have been published that examine the rates of ASD in the population of children with DS and the neurodevelopmental phenotype of individuals with the dual diagnosis of DS-ASD compared to those with DS or ASD alone (37)(38)(39)(40)(41). The growing recognition of the dual diagnosis evident in these studies could signi cantly impact the direction of the research effort for this group.…”

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confidence: 99%

Prevalence of Autism Spectrum Disorder (ASD) in all Individuals Diagnosed with Down Syndrome (DS): A Systematic Review and Meta-analysis Protocol

Banihani¹

2022

J Clin Med Res

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Background: Traditionally, autism spectrum disorder in people with Down syndrome was believed to be uncommon. This misconception is rooted in the challenges that a dual diagnosis poses. In fact, evidence indicates that children with Down syndrome are at risk for autism spectrum disorder with a potentially higher prevalence than the typically developing population. The purpose of this review is to determine the reported prevalence rate of autism spectrum disorder in all individuals with Down syndrome in comparison to the prevalence rate of autism spectrum disorder in the typical population when specific diagnostic tools are used. Methods: A systematic review will be conducted of the prevalence and incidence data and perform a meta-analysis of these results. This study will consider all studies that reported on children and adults with an existing diagnosis of Down syndrome and diagnosed by the standardized assessments for autism spectrum disorder. The diagnoses made by team assessment (psychologist, psychiatrist & developmental pediatrician) will also be considered according to DSM-III, DSM-IV or DSM-V criteria for diagnosing autism spectrum disorder or if they use autism spectrum disorder screeners. Studies will be considered from all countries that have data reporting prevalence on this topic. The language restrictions will not be applied attempting to translate studies that are not in English. The five databases (MEDLINE, Embase, PsychINFO, Scopus, and CINAHL) will be searched. Two reviewers will conduct all screening and data extraction independently. The articles will be categorized according to key findings and a critical appraisal performed. Discussion: The results of this review will bring increased awareness of the presence of autism spectrum disorder in individuals with Down syndrome. In doing so, this may facilitate a recommendation for screening and diagnosis of autism spectrum disorder in all individuals with Down syndrome. Based on the research demonstrating the benefits of early identification and intervention on the outcomes of children with autism, we anticipate similar benefits in this population. This will guide the allocation of resources and direct future research.

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Language profiles of Welsh-English bilingual children with Down syndrome

Ward

Sanoudaki

2021

Journal of Communication Disorders

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Bilingualism in children with a dual diagnosis of Down syndrome and Autism Spectrum Disorder

Cited by 7 publications

References 73 publications

Hyperphagia and Down Syndrome

Hyperphagia and Down Syndrome

Prevalence of Autism Spectrum Disorder (ASD) in all Individuals Diagnosed with Down Syndrome (DS): A Systematic Review and Meta-analysis Protocol

Language profiles of Welsh-English bilingual children with Down syndrome

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